Hi! I was on Erivedge for only 2 months and my hair loss is rediculous! Anyone else with this?

My doc said I would most likely not experience much hair loss because I am only on it for a couple months. Boy was she wrong! It wont stop & I have been off the drug for over 3 weeks now. Now what? How much longer?? Thanks for any suggestions!:)

Responses (5)

Hello and welcome. I was on Erivedge from Nov 2012 to this past May. At my last biopsy, it was a keloid, so the doctor took me off the medication - we will see what happens when I go back next month. My hair started thinning after a few months of taking this, along with the other side effects. Since I have been off of the drug for about 6 weeks, I have very little hair left - it is still coming out, and last week I lost my eyebrows, and my eyelashes seem to be going. Hoping they are right, and it will come back.

Hi Cas- well, I think we ended near the same time then. How are you doing? I had to buy a wig today. This sucks. I only had surface level bc's & I do NOT recommend this drug to those in my situation! Aldera or getting burned off better than being bald!! I think it's a wonderful drug for serious cases. But think first is all I'm saying to all!

It's kinda nice to talk to someone going through this also. Thank you. When is your next appointment ? Sorry about your eyelashes. So far I kept my lashes & brows. Stay tuned!;) Maybe this is a test of vanity for me! I probably could have used that. Anyways, what state do you live in? I live in CA. Do you work? I'm a medical device rep, so I needed to get wig to look professional. I deal with sick people. I didn't want them worried about ME being sick too! Hang in there!

I was on Erivedge (originally called GDC-0449, then vismodegib) from Feb. 2011 to Dec. 2012. Took one two-month break during that time. Lost all my hair, everywhere. I've been off now for eight months, and some has returned - maybe 20%. I keep hoping for more, but it looks like this is it. Originally, I was told it was temporary, but I think the longer you're on it, the more permanent it becomes. Genentech, the manufacturer, will not answer inquiries about this - I have asked directly and was told that they don't know.

Hi, I been on for 13 months for metastatic BCC. This is the first contact I've had with others on Erivedge. My body hair seemed to stop growing after a few months, at about 6 months my beard started to fall out in gobs and I got terrible foliculitis (think razor bumps only much worse). That finally went away and then my mustache fell out. During all this the head hair got thinner and finally looked scraggy enough I shaved my head. It barely grows back, just a few small hairs. Body hair is thinned out a lot but seems stable now. My eye lashes seem to be getting really thin now. I suspect another month or two and they will be gone too, ugh. My biggest symptom in sometimes really nasty muscle spasms. Reducing does seems to be the only way around it.

Shocking right! I only took it for 6 weeks and am now 7 weeks post treatment. Could no longer wear a hat everywhere so got a wig 2 weeks ago and just last week my eye brows started falling out... when does it stop? I guess for those who had serious bcc this is a great drug , for me, can't figure out why I would need something this serious. Only hope is that most of the other side effects have now gone away so hopefully the hair loss thing will stop soon too.

I hope my experience is atypical. I was on Erivedge for almost two years. Was told I'd have to take it every day for the rest of my life, but I got disgusted and quit 8 months ago. At that point, I had no body hair whatsoever. I now have a VERY thin inch of hair on my head with some bald spots, hardly any eyebrows or lashes and pretty much nothing else. I was told the hair loss was reversible, but at this point I don't think it is. Don't know if how long you were on the drug is a factor - hopefully the shorter you took it, the better you'll recover.

I took Erivedge from October 2012 until end of December 2012. Had to get off because of the side effects of fatigue.

Thought that there would be minor side effects... but... in February 2013, my hair came out all at once... then my eyebrows. 2 months AFTER stopping it. Good news, was that never lost my eyelashes, and my eyebrows, came back in quickly...

My hair has been coming back... had to get a wig in February 2013. Now August, and hair growing back... thick... but not close to not needing my wig. Would never have gone on the drug, had realized the potential for losing hair. But it is coming back.

Now I am using a cream... Carac... and having biopsies done for suspicious spots.

One other comment... is that after I decided NOT to go back on Erivedge, discovered that if you start it, then for the results to be good, you have to stay on it for the rest of your life. If you get off of it, the spots may come back. Mine did. So for all of that... got the spots back...

The Carac is not as strong as what I have experienced with Efudex or Aldera. But they are not having me use daily... just once a week, and for one leg at a time. So far, not much that can tell, as a side effect and some spots gone.

Hi, I been on for 13 months for metastatic BCC. This is the first contact I've had with others on Erivedge. My body hair seemed to stop growing after a few months, at about 6 months my beard started to fall out in gobs and I got terrible foliculitis (think razor bumps only much worse). That finally went away and then my mustache fell out. During all this the head hair got thinner and finally looked scraggy enough I shaved my head. It barely grows back, just a few small hairs. Body hair is thinned out a lot but seems stable now. My eye lashes seem to be getting really thin now. I suspect another month or two and they will be gone too, ugh. My biggest symptom in sometimes really nasty muscle spasms. Reducing does seems to be the only way around it.